The suicide of Robin Williams touched a nation in ways that the passing of few celebrities has. Maybe it was his electric wit, his iconic TV and film roles, the way he moved so seamlessly from comic to dramatic work, or even the fact that a mention of his name brings a smile to most everyone. The sudden realization that behind that imprinted image of impish happiness, there was a man unhappy enough to commit such a desperate act is difficult to process, until his grieving wife Susan Schneider disclosed that he was suffering early-stage Parkinson’s disease.
Former Time Warner chairman Jerry Levin thinks that the latter disclosure will become one of many lasting legacies of Williams’ life and career. For the very first time, Levin discloses here that he too suffers from Parkinson’s disease, and explains the toll that the physically debilitating disease might have begun taking on the electric wit of a great physical comic. He was kind enough to share his feelings with the readers of Deadline Hollywood.
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DEADLINE: Tonight at the Emmys, Billy Crystal will deliver what is sure to be a touching tribute of his friend and comic collaborator Robin Williams. Tell me about your own reaction to his death and then the revelation that he was suffering depression after being diagnosed with Parkinson’s disease.
LEVIN: Well, first of all, I think that the fact that Robin’s wife put that out was a courageous and important thing to do. There is so much misunderstanding about Parkinson’s. To make the connection between Parkinson’s and depression probably will have a substantial impact now where people will begin to see, without stigma and without mischaracterization, that this is a 24/7 kind of disease that affects your functions. There is a whole psychological layer underneath the physical effects of Parkinson’s that is usually not even discussed or disclosed. I think this is a tremendous contribution to awareness, and it will be remembered along with his human spirit and joy. Some of the words that are used are quite ironic, that it’s a progressive, degenerative, disease. So, let me tick them off, not because I’m an expert from a research or medical point of view, but let me try to describe what it’s like inside, once you get the diagnosis.
DEADLINE: Before you do, how do you know this?
LEVIN: How do I know? I have Parkinson’s. It’s an important question because mostly it is a subjective diagnosis, one that really comes from observation. There is available — although it’s not offered many places and it’s expensive — a functional brain scan, a PET scan which can actually detect the production of dopamine in the right hemisphere and the left hemisphere of the brain. That can render a 90-plus percent definitive diagnosis. Most people, most people do not have access to that. So mostly, the diagnosis is totally subjective. In my case, my wife suggested we go to a neurologist. He took a look at my face, touched my hand a few times and said, “I think you have Parkinson’s.” I was blown away. This was eight-plus years ago.
DEADLINE: What was your reaction?
LEVIN: Disbelief. I sought a second opinion from a very distinguished practitioner and researcher at UCLA who said, “I don’t think you have Parkinson’s but just in case let’s do this functional brain scan.” We did it. He came back and it was like a thunderclap. He said, “You have Parkinson’s.” While there is this limited availability test to diagnose, there is none to chart the progression of Parkinson’s. It’s totally subjective, based on observation. Right there, the first index of the physical trauma of having someone observe you, looking for symptoms. It makes you self-conscious. If you are a performer, or you are in the public eye, this is something you have never experienced before. Things you once thought was a symptom of getting older…well, you now have to question everything, because the telltale signs are observational. An example: One of the telltale signs of Parkinson’s is this chilling phrase called Bland Effect. What it means is that your facial expression begins to dissolve into lack of emotion, no vibrant expression, it’s almost blank and it’s quite noticeable. When you get older and look in the mirror, normally you would say, I’m starting to look like my father, I’m getting old. Now you put an overlay on that. You look in the mirror and your eyes aren’t expressive. Your smile is barely discernible and artificial. So, that’s kind of a double trump on what the mirror reveals about aging.
DEADLINE: What might that have done to a comic with an expressive face like Robin Williams?
LEVIN: Now you take someone who in Robin’s case was spontaneously expressive in so many dramatic ways and you begin to have a face that can’t express properly, from a psychological perspective it’s a daunting prospect. The other index of Parkinson’s relates to rigidity, the motor function. It’s a movement disorder as well as a mood disorder. Rigidity express itself when you walk your hands don’t move freely. You move very, very slowly with a noticeable gait. Again, if I’m Robin, and part of my expression is the nimbleness with which I parade around physically. And you have this feeling that’s not just external, but you begin to feel inside that, I’m walking slowly. I’ll give you an example. I feel, whenever I’m walking, that I’m just learning to walk again. I’m sending brain signals to the physical place they go, which makes us walk. Yet, it is so hard. It feels strange. It’s like, every time I get up to walk somewhere I have to learn again a new assignment how to walk. So, the psycho-trauma of that plays on the simplest thing, you pushing yourself to get from here to there. It’s like a slow motion camera. Except it’s happening to you.
DEADLINE: What else would plunge a comic like Robin Williams into depression, which his wife said had happened?
LEVIN: The other indexes, there are many, but the tremors are very disturbing. You can have tremors and it might not be Parkinson’s but if it is Parkinson’s, then you know it’s only going to get worse. Again, even though you’re used to being in the public eye or performing, it’s awkward, it’s embarrassing, it’s non-functioning, it’s uncontrollable. It is a badge of dishonor somehow, beyond the inability to express yourself in a normal fashion. Balance becomes an issue. That’s a kind of frightening and terminal response. You need to hold onto something because not only do you have a slow gait in walking, but you’re not sure footed anymore. You are going up or down the stairs, which used to be just the most natural thing, and you need to hold onto something. When you have to hold onto something, that’s a physical act, but also psychologically, it puts you in a category of needing help. If there isn’t a railing, you actually need somebody to help you. If you’re the kind of fiercely independent person I always prided myself on being, it’s the first traumatic effect of needing help. And there is difficulty in asking for help.
DEADLINE: It sounds like everything from a concession to your own mortality to a realization you are never going to be the same as you once were.
LEVIN: Everyone is unique and no one can tell you how quickly the neuro degenerative disease is going to progress, and that’s the word they use. You have to rely on someone with a practiced eye to tell you it’s getting worse. You’re in decline. You know in your heart and in your mental capacity that you’re in decline. It’s there when you look in your internal mirror, and it’s something you don’t really want to face. That’s why depression is not only associated from a biological and a chemical and hormonal perspective, but it’s also because there is a correlation to the fact you are unprepared to face this dysfunctionality coming at you. How that manifests itself is unknowable.
DEADLINE: You were diagnosed eight years ago, after you stopped running a billion-dollar corporation. You’ve spent time with philanthropic pursuits. We’ve seen this spike in awareness of ALS with this ice bucket challenge. It’s wonderful, it’s raising money, but I remember that Lou Gehrig died from this disease going on a century ago, and it’s still here. Is there a prospect of a cure or at least a way to stave off the degenerative effects you are describing?
LEVIN: Well, first of all, it did take somebody like Lou Gehrig to get up in Yankee Stadium and say something, and then he was the picture of the disease. I think Robin will have that affect.
LEVIN: What’s happening with ALS is really helpful, in the way that awareness is being boosted by using social media for research. There is no cure for Parkinson’s. There are research efforts, there is the Michael J. Fox Foundation, and there is research at most of the major institutions around the world. There is investigation into biomarkers, but most of the activity is to help with the treatment of the symptoms as opposed to the cure or prevention. There needs to be much more awareness.
DEADLINE: The death of Robin Williams has led you to come forward here. Can you explain?
LEVIN: Basically the reason I really wanted to start talking about it now was, to raise awareness and understanding that there may be a million souls in the U.S. who have Parkinson’s, but there are probably many more who are undiagnosed. There is a lack of research and actually a relative lack of practitioners who are versed in Parkinson’s. Probably one quarter of those who have Parkinson’s are being treated by a specialist. The rest are not. For me, it’s not a question of philanthropy, it’s really a question of awareness. That’s why I think what Robin represents is so critical. We see the effects of addiction, we know what clinical depression means, but when you put it together with this debilitating disorder that slowly takes away your ability to function and to express…and we haven’t even covered the autonomic impact on your ability to sleep or your ability to swallow. Once the diagnosis is given, there is an enormous psychological shift and you tend to view the world from that prism. It is so hard to distinguish what’s normal anymore, what’s Parkinsonian.
DEADLINE: Similar to a degenerative disease like Alzheimer’s?
LEVIN: With Alzheimer’s and dementia generally, people see that because they see it in their family and can grasp how sad it is. This takes away your total ability to function in ways that we characterize ourselves as advanced human beings.
DEADLINE: Beyond what you’ve said, it certainly seems like Robin Williams, the prospect of being robbed of his incredible mental and physical dexterity sounds like taking a great baseball pitcher and cutting off his throwing arm.
LEVIN: Yes, exactly. Part of his passion was the freneticism of his presentation, which requires agility and spontaneous expression. I can only imagine what it would have been like for him to begin to feel the effects of that taken away from him. What is it that we ultimately have? It’s our ability to express ourselves, our ability to communicate. It’s who we are. If you see that curtailed, and here again, we’re not talking simply about dementia, which is a terminal thing, but your whole physical function, and the ability to get from here to there…it’s everything, and not just one particular part of either your anatomy or your psyche. That’s what makes it such a dreadfully comprehensive disorder.
DEADLINE: You’ve held all this in for the better part of a decade. Why share it?
LEVIN: Now, I’m asking myself, why am I expressing myself at this point? I think part of it was stimulated by what Robin obviously felt and what his wife decided to disclose and the fact that he didn’t disclose it, but she felt it was important to disclose it. In some strange way I feel it’s a badge of honor that I want to disclose because it can help people understand the nature of it. I also like to turn it into some positive wisdom because I’m doing things for myself that I never did before, that actually make me feel very good. I changed my diet completely. I am totally a vegan, organic, local farm to table, non-GMO. What happens is, you look for tidbits of research and information. So, at some point I saw that there was a relationship between the negative aspects of pesticides and Parkinson’s. Whether it’s true or not I assimilated it. Now I have an extremely healthy diet and I’m happy about that. I also believe that the physical dysfunction that comes from Parkinson’s can be deterred or restrained by exercise. So, I always jogged when I was younger and now I work out every day, in one form or another. The other thing I believe and this is not clinical, but sleep is affected by Parkinson’s. I used to, as a roaring executive, get four to five hours at the most, sleep for 40 years. That had to take a toll. So I now trained myself to sleep eight hours because I just think somewhere whoever designed our diurnal response mechanism must have thought that sleep was very important. I feel much better. Two other things, I try to live a stress-free life. How is that possible if you’re in the climate that we’re used to? Well, stress aggravates everything I’ve just described and takes a toll and it eventually catches up with you. Finally, I try to get as much cognitive activity. It’s not only physical exercise, but exercise the brain. I have to say, my particular neurologist is very pleased with how I’ve slowed the progression of this disease. At times I say to myself, “Really all I have is a diagnosis. I have Parkinson’s. I have a diagnosis of Parkinson’s and this is how I’ve changed my life.”
DEADLINE: When you were diagnosed, you were part of an elite social circle. Were you open about it? Did it make you shy away from being part of that set?
LEVIN: Initially there’s a shock that has to be internalized. I did not disclose it generally. Certainly I did with my family. Whether it’s conscious or part of the psyche, it’s not something that I wanted to reveal, nor did I feel comfortable anymore. I don’t know, obviously, what stage Robin was in. However, if there was medication or symptoms of Parkinson’s, then that means the effects were beginning. You have only to look at a picture to see whether there was the beginning of non-expression, which is something we don’t normally look for. Now, if I’m in a social setting and I have some tremors, I’m OK with it. Most importantly, I think it helps to be open about it. That’s the other reason for wanting to say something now, but also to raise awareness and consciousness. I spent some time after Time Warner working in mental health and seeing the stigma that comes from any form of mental health issue from depression, to addiction, to anxiety and that’s got to change. So, this is a subset of that.
DEADLINE: This sounds like a drier and less icy version of dumping a bucket of ice cold water over your head, for Parkinson’s.
LEVIN: That’s exactly what it is.
DEADLINE: Where do you take it from here? We’ve seen how the disease affected Michael J. Fox and Muhammad Ali. As a guy who ran one of the biggest media companies, what’s the next step to create awareness and a support system?
LEVIN: I think the first thing is for the public. There must be many others who are similarly situated so that it can be identified, understood and cared for and then of course, the ability to provide more resources. It’s not simply throwing money at the research, there are a lot of important research activities taking place, including Michael J. Fox’s foundation, but it’s being done around the world. It’s just some way of galvanizing the effort, the moonshot. I’m old enough I was growing up at the time when polio and infantile paralysis was a scourge. Indeed we had a president who had it. Now it basically doesn’t exist. There are so many things that can be done. I’m as much interested in the treatment as the research to find the cure or prevention or to slow the progression. The reason I’m interested in the treatment, every human being has real value. There are people suffering either because they’re not being treated properly or they’re undiagnosed or they’ve been diagnosed and they can’t handle it. That’s frankly my biggest issue, to help those who either are there or don’t even know they’re there. Normally, these things are about raising awareness and money, applied to research around the globe. It’s the psychodynamic of Parkinson’s that it’s such a comprehensive kind of…I was going to say makeover…takeover of you’re being. How do you deal with that? That’s what I want to help. Am I dealing with it? Am I depressed? Am I forlorn? Am I embarrassed? Do I feel that the curtain is closing? Maybe at times, some of those things, but basically it gives me more of an appreciation each day of what we have, our families, where we are how lucky we are. That’s my interest, in helping, not healing in a cure sense, but healing in the manner of how you conduct your life. We all come up eventually with things that really, dramatically change our predictable lives. It happens to everybody. Two things I’ve never talked about. I had epilepsy as a child and grand mal seizures; I’m just wired or my neurological system is wired in a way that these things are going to happen though there is no statistical evidence that that’s the case. I also believe that the way I worked 25 hours a day and suppressed a lot of emotions and sometimes did things that I’m not proud of, even though I tried very hard to do what I thought was right. That kind of intensity couldn’t have been healthy.
DEADLINE: Are these factors in contracting Parkinson’s?
LEVIN: There no established correlation between what I’m describing and the incidence of Parkinson’s, but if you start early on by paying attention to things that are really important, even if you’re in a start-up where you’re working 25 hours a day or big corporation where you’re working 25 hours a day, pay attention to what your values are. So I guess I’ve got a broader theme that I hope I can communicate in some way.
DEADLINE: It seems like you are saying that with Robin Williams’ wife coming out and taking a tragedy and giving something positive, you are going to rise to the occasion. If we had to guess and look ahead at what Robin Williams’ legacy might be regarding this disease, what might it be?
LEVIN: Well, I think it will be a more holistic view of the management and treatment of neurological impairment including depression, addiction, Parkinson’s, Alzheimer’s. The reason I use the word holistic is that, some of these things are related, not just in cause and effect, but there are attributes that might affect someone. In his case there were several of these factors. To be able to not just treat, but to understand, from a societal point of view, from a family point of view, a clinical point of view…this is not cut and dry. There is this thing called Parkinson’s and there’s a whole area of mental health that affects almost every family that I can think of, that has to be dealt with in a way that takes into account the whole person, the family set up, the environment. On a much broader approach, rather than stigmatize, keep it closed or closeted. I know I’m not being specific, but there’s a dream I have that these issues will be front and center, just as heart disease is and cancer is, diagnoses that people can see and understand. Parkinson’s affects our humanity, not just our physicality. My dream would be that there are Robin Williams Clinics that can actually help people, and there are resources to help people lead constructive lives or better lives than if they were hiding behind the shame of something they don’t want to disclose.
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